Research of things that matter most for people who are dying

The views of hospice patients and their
families are in danger of being lost, a University of
Canterbury (UC) postgraduate student researcher says.

If
palliative care is to be holistic, New Zealand needs to find
out from patients and families what they believe is
important, UC masters students Denise van Aalst says.
Hospice New Zealand comprises 34 hospice or palliative care
services around the country.

``The hospice movement was
set up to be a voice for the voiceless. Those needing
palliative care needed someone to speak for them and ensure
they received the care they needed and deserved.

``My
research will give a voice to people receiving palliative
care and it allows those working with the dying to hear what
their patients and families say is important to them.

``I
interviewed hospice patients and family members to find out
what they believed were the most important factors in
palliative care. My research involved people who work in a
hospice, the environment, philosophy and holistic care.

``Patients and family members were consistent in
describing the value of the people who work in a hospice and
the little things that are part of everyday care.

``All
staff were valued and their attitude and approach was seen
as caring and supportive and assisted in maintaining dignity
for dying people.

``The willingness of staff to go the
extra mile for patients and for families was also noted and
appreciated. Staff who would take the time to do little
extra things for patients, such as bringing in a special
food, taking time to sit with them, acknowledging them as a
special individual made a positive impact that allowed
people to open up and trust more easily.

``The fact that
the care clearly extended to family members as well as
patients, a recognised essential in palliative care was
greatly appreciated and also had a positive impact on both
patients and on family members.

``Tangible little things
such as crocheted rugs and handmade quilts on beds, flowers
on meal trays helped to create pleasant surroundings that
were a part of feeling safe and cared for.

``My research
will enable those caring for the dying in any context to use
the information shared by individuals as guidance to enhance
the care they offer to a dying person so that their final
days may be more tolerable, even perhaps pleasurable: to
help them live until they die,’’ says van Aalst, whose
study was supervised by UC palliative care programme
convenor Kate
Reid.

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